A review/re assessment... your thoughts/experience please

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My Son's speech therapist/teacher has advised us to have our son re assessed/reviewed for different diagnosis. She doesn't believe that the "Mild Autism" label fits him (diagnosed at 3.5years now 5 years). She doesnt see any of the repetitiveness or social issues that are common in kids with Autism. She's thinking that his behaviour is a result of poor language skills and a sensory disorder.

I agree that he has come along in leaps and bounds since his original diagnosis and am over the moon about it!
But I'm somewhat bewildered about having to go down the whole lengthy assessment path again to get a "correct" label.
I kind of feel like I dont know what we are really dealing with all over again and feeling confused and annoyed for so many other reasons... hard to explain. I guess I felt that I was at a place with the original diagnosis where we were all comfortable and were moving ahead beautifully in a positive way!? I probably should be greatful right?...anyhoo...

Here are some of the things that my son does....Can anyone here give their thoughts on whether my Son's traits sound like Autism OR a Language&Sensory disorder?

Some examples off the top of my head;

No longer insists but much prefers to follow same routes home from shops and school.
Wants me to tell him the time before he gets dressed. Or hold up a green flag to get him going in the morning.
Can follow instructions some days not others. Seem's to be in a fog some days. Often replies "Cant remember" or " I dont know" to many easy questions. Finds it very difficult to concentrate and gets bored easily.
He is able to get himself dressed but much prefers me to do it... insisting that he cant do it himself.
Doesn't like to share anything that belongs to him. Particularly food. Wont let people "borrow" from us or remove anything from the home. Wont take any of his toys etc for show and tell at school.
Dislikes all of my friends kids and wants them to go home when they come over. He's very particular about who he befriends and choses quiet placid kids to play with. Has good social skills with those he enjoys being around. Is a follower not a leader.
Wants parents attention 95% of the day & night.
Gets frustrated easily if doesnt get his way.
Always picks out the fine details in books..particularly numbers when reading to him before bed.
Cant stand noise of any form particularly babies and young children crying. Wont have the radio playing indoors. Often wont let me put the car radio on. Doesnt like group singing eg singing happy birthday at a childs party.
Wont let mum or sister into school classroom when picking him up from school, we must be standing outside when class finishes yet other parents are ok to go in to the classroom and wait.
Tires easily, seem's to have poor muscle tone.
Has lots of anxiety and fears of new places, new things.
Wont put stickers or stamps on his hands. Dislikes dirty hands wants them washed straight away.
Prefers soft bland foods.
Likes things done the same way each time.
Doesnt like change: had haircut and was too short and "no one would recognise him" so we had to look through old photo's for an hour before he calmed down. Doesnt want sisters hair cut and Doesnt like mine different.
Goes through stages of poo'ing in innapropriate places eg toy room and pants.
When he gets an image of something in his head, that is how it must be; Ie told him that we were going to take him for a ride on a train. But he insisted that the train must have no roof or windows for him to ride in it.
Got extrememly upset in a resturant because he didnt get a "blue" wrapped chocolate... we left the restaurant and he tantrumed all the way home.... yes sounds normal until he told us he couldnt settle until we went back to the restaurant to park in the same car park for a minute then go home... which we did and all was fine.

So... Your personal thoughts etc would be appreciated

You don't have to have your son reassessed because one person recommended it. What do your instincts tell you? You know him better than anyone, and have, I assume, done tonnes of reading/learning about ASD.

How often does this speech therapist see him? And for what duration of time? Is it quiet and one on one? Does your son enjoy these sessions? My sons can behave like completely different children when it is quiet and they are doing something they like one on one with an adult, as opposed to being in a loud, group situation. Has she observed him around other children and under stress?

Does he have a regular classroom teacher, and if so, what does she say?

But either way, what does your gut tell you about reevaluating him? You are the expert on your son.

It does sound like your son's rigidity definitely fits with what I know about AS.

"Wont let mum or sister into school classroom when picking him up from school, we must be standing outside when class finishes yet other parents are ok to go in to the classroom and wait."

This sounds like my guys. One just had a meltdown this morning about me attending an upcoming field trip, because he was not expecting it. *sigh* And I HAD to be standing in the same spot every day to pick them up when they were in kindergarten.

A label is a tool. Nothing more, nothing less. The AS label should leave you with more options and access than the more specific ones she is suggesting (which tend to be part of or co-morbid with AS).

So ... being the lazy person I am, if this was me, I wouldn't bother with the reassessment at this point. If you start to see negative ramifications from having the label in a file, or if your child gets older and HE wants to throw off the label, THEN do it.

A reassessment could be useful, but you might get more out of it if you waited a little longer.

My youngest had serious speech issues and didn't speak till he was 5/6. He had a whole bunch of other behavioral stuff going on and we had a dx of PDD-NOS. He did really well in speech therapy, and then started to outgrow a lot of things.

Right now he's being looked at for hyperthyroid, which could explain some of the autismy behaviors. He's not NT, and definitely has some uniqueness. I had a full workup done on him this year while he was 8 for completely different reasons. He came out as not even close to being on the spectrum but having some really odd and unique neurology.

You might find that he is going through a lot of changes right now, and once the chips settle he's not on the spectrum at all, (or not). At 7 my son may have come out as having an ASD still, but at 8, definitely not. Your son may be totally different than mine, and I'm no Dr. So, mom to mom, that's my advice.

Your son still sounds very much like he as an autism spectrum disorder. You see him all of the time. The speech therapist only sees him for short periods of time. My son enjoys talking to adults, but it is when you see him with his peers that his diagnosis is very apparent. It is great that he is making such improvements, and he sounds like a very gifted child, so I am sure that he will end up doing fine. I agree that maybe waiting it out for a couple of years to see what develops before you go through all of this again. At least now you have the diagnosis, and you can get help from the school system. If you end up not needing it down the road, then great.
Of course I am not an expert either, but a lot of the rigid behaviors and routines still sound like ASD to me.

Thank you for your replies

I'm thinking that I'll wait it out a bit longer for re assessment. (I wish I had a crystal ball and had the answer to take the right path for the best outcome for DS ) However I do feel that he's not getting any extra help having the label, i guess it's because at this point he's not needing any extra assistance other than speech.

If I hold off and have him re assessed later if things continue to improve and he wishes to lose the label, will they take it away when he's in his teens?

He goes to language school one day a week for 4 hours. He loves going there and gets upset if he's sick and cant attend. He does seem to fit in very well in environments where he is extremely happy, so I guess that would be the reason his language teacher isnt seeing it. She does see that he is very rigid and anxious but puts that down to the language issues.
His regular school teacher thinks he fits the mild autisim label mostly due to rigidity and sensory issues,but she says he's not needing a great deal of assistance at this stage like some of the children she has taught with autism.

I wish my gut was telling me one way or the other. But despite all the reading I have done, I feel that he fits the label sometimes not always. One day I'll be sure it is, then the next I'm not convinced ... It's confusing and playing with my head!! He's very good at fitting in and now knows when to adjust his behaviour when he needs to, but clearly it takes some effort. He blows me away with how he deals with his issues and devises solutions to help himself.

Perhaps some of the improvement is due to my expertise on automatically avoiding most situations that set him off

Thanks again for your replies

This feeling is *very* common amongst parents of autistic kids. I used to go round and round in my head about whether there was something going on with my son. Especially since someone told me she worked with autistic kids and they're always the same from day to day. BULLSH*T! I'm so glad I didn't listen to her and got him evaluated.

But as DW said, the most important thing about the label is how useful it is for getting your child what he needs. I know the uncertainty is uncomfortable, but remember, even autistic children grow and develop over time, so any diagnosis is kind of a moment in time.

My understanding is that the label could be removed any time.

As for the round and round ... yes, we've all done that. I think by the time my son hit 10 or so was when I felt it really, really obvious. It is common for a lot of issues to start cropping up around 3rd or 4th grade, and again in middle school, if your child is on the spectrum.

Thank you I feel relieved that I'm not the only one that feels this way at times.

It is confusing... given the different opinions of others. The uncertainty of the dx mostly arises when others suggest otherwise such as his speech teacher or when things are running smoothly. Yet when I chat about his behaviour to friends interstate they are sure it's not NT. And hubby is convinced he's on the spectrum somewhere.

And certainly the "good phases" throw in more confusion to the mix!! But then out of the blue for a week or two comes consistent behaviour that I wouldnt consider NT. .. Yesterday we had a dinner party with friends and their kids. DS wanted to show them his play station but kept coming to us to ask us how he should ask them to join him etc... then Today for example his best friend came over to play. His friend's pants got wet from playing in the sandpit. I wanted to offer his friend a clean pair of socks and pants of DS's to borrow and DS absolutely flat out refused to loan them...not even loan the socks! So much so that he screamed and cried and fretted over it... so his friend went home in wet pants and bare foot... DS then suggested that he didnt want to be his friend anymore because of this... yet it was my suggestion to loan them in the first place.!? I wouldnt imagine any NT child to react so badly to a kind gesture?! This has possibly caused a domino affect now where he'll be uneasy for the rest of the week and more and more issues will be more evident.


I imagine there are possibly going to be times where things might get a little tricky later, So I'll sit tight and let it be at this stage